Curing Type 1

As walk season and Diabetes Awareness Month get closer, and in light of my recent experience at the AADE (American Association of Diabetes Educators) conference, I’ve heard a lot of people talk about what it would mean to cure diabetes. To me, curing diabetes is about much more than being able to eat whatever I want, or about not being “different” in some way because of my diabetes.

Why do we need a cure? THIS is why.

Because type 1 diabetes is a disease that we didn’t ask for, didn’t cause, and that pervades each and every aspect of our lives.

Because our health relies on our ability to mimic a finely-tuned feedback loop of blood glucose and insulin supply between the brain, hormones, and the pancreas. (And let’s face it, we diabetics are good, but we’re not quite THAT good.)

Because we endure physical pain, callouses, bruises, and scar tissue to dose and deliver the life saving medication we need daily.

 

Because we get used to the needles, but they never stop hurting.

 

Because none of us can remember the last time we got a good night’s sleep. Because parents of children with diabetes should not have to wake up at 12 AM and 3 AM every single night. Because a CGM alarm jolting you awake 5 times a night is 5 times too many.

Because as I write this, my blood sugar is 322 after my third infusion set change of the day. Site change # 1 felt like I was being stabbed in the side with a burning sword, and site change # 2 came out with a bloody cannula. Here’s hoping site change # 3 was a success so I can go to sleep soon.

Because one autoimmune disease isn’t enough- Type 1 puts us at risk for hypothyroidism, Celiac disease, and premature rheumatoid arthritis, among other things.

Because I shouldn’t have to read that my disease puts me at a much higher risk for developing all sorts of infections in my microbiology textbook.

 

Because we know, in the back of our minds, that despite our best efforts, we could still go blind, or lose limbs, or go through kidney failure. All because of this disease we didn’t ask for and didn’t cause.

 

Because sometimes, the ability to manage your disease depends on your ability to pay for the supplies and medications.

Because we have to fight our insurance companies tooth and nail sometimes to get what we need. It’s an interesting experience, telling someone who knows nothing about diabetes that not having a certain medication/device is a health hazard and safety risk.

Because I’ve got enough charts and notebooks of blood sugar patterns and insulin rates to wallpaper my room- none of which have done me much good, thanks to the unpredictable nature of blood glucose.

Because the simple act of leaving your house for the day requires a completing a lengthy checklist, and forgetting any single item could be catastrophic.

Because “grabbing a bite to eat” and “going out for a run” are never just grabbing a bite to eat and going out for a run- so many factors have to be considered to complete either activity safely. And so are driving, flying, going on vacation…

 

Because type 1 diabetes is a disease that impacts physical, mental, emotional, and social well-being. A diagnosis changes your entire life, and the lives of those close to you. We are strong, we are fighters- but we need a cure.

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DBlog Week Day 1:Why I’m Here

I am so excited to be participating in DBlog Week 2016! This is my first time writing for DBlog Week, and also my first post as a new college graduate (hooray!). Today’s topic asked us to reflect on why we blog, and what message we are trying to send.

I started blogging almost a year ago, after attending a student leaders’ retreat with the College Diabetes Network. I had never gotten to interact with so many people my age with diabetes before- I didn’t know anyone growing up, and my university’s chapter of CDN was very small. Being around 30 other people who were all checking their blood sugars and giving insulin at the same time I was had a much greater effect on me than I expected: I had never felt out-of-place doing these things before, but being surrounded by others doing the same things I was gave me a profound sense of “belonging” to the group, and to the diabetes community as a whole.

After I went home, I knew I wanted to get more involved in the diabetes community; several people I met at the retreat wrote their own blogs, and I decided it was something I’d like to try. Originally, my focus was to reach as many people as I could with my writing, to contribute to the DOC, but writing for my blog has slowly shifted to become something therapeutic for me, especially since I decided to expand my focus to my experiences dealing with social anxiety and relationships in college.

Making the decision to blog, in itself, demonstrated how much my self confidence has grown over the past few years. I often joke that I was “scared of my own shadow” during freshman year of college, but it’s not far from the truth. Expressing my thoughts and feelings on such a public platform is something I never would have considered even a few months before I started this blog- but here I am, putting my writing on the internet!

I want people who read my blog to know that diabetes (or any life circumstance) shouldn’t stop you from doing something you want to do, while also conveying that everyone manages and reacts to their diabetes/other challenges differently. No one experiences EVERYTHING about it in the same way, but we all share enough to feel connected to each other.

We are Fighters

The thing about fighting diabetes battles is that they teach you not to give up.

Living with diabetes is about battles. Some are big and some are small, but none is more or less important than any other. We fight for ourselves- for our lives, our health, for a stubborn high blood sugar to come down- and we never stop.

But many of our battles are about others. We fight for better public understanding of T1D each time we address comments like “did you eat too much sugar when you were younger?” We fight for accommodations, whether at school or work, to ensure our safety. And we fight insurance companies and pharmacies, who don’t always understand the paramount importance of timeliness and accuracy in regards to filling prescriptions and shipping orders.

I’ve had diabetes for so long (15 years in July!) that most days, I don’t fully comprehend the amount of time I spend taking care of myself and proactively ensuring that I receive the supplies I need. But some days- like today- the reality of the energy it takes to manage diabetes washes over me.

I use a Dexcom G4 CGM, and I have for just over a year. Now, I’m the kind of person who reads instruction manuals cover-to-cover, so I’m not sure how I missed the fact that transmitters have a finite battery life, and should be replaced every six months. Guess who hasn’t replaced her transmitter in that year of CGM use? Yours truly.

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Two weeks ago, I received my first “transmitter battery low alert” and, upon finding out that getting a replacement would require documentation from my doctor’s office and insurance approval (why this is necessary for something I already own and just need to replace, I have no idea), I did everything I could to speed up the process. An obscene number of phone calls later (last time I had to get paperwork pushed, the process took nearly 3 months. I don’t have 3 months), my replacement transmitter arrived at my house. And my distributor sent me a G5, despite several phone calls during which I indicated I needed a G4.

I was exhausted. I was livid. But the thing about fighting diabetes battles is that they teach you not to give up. Even if it takes a while, you will always come out on top. So I got back on the phone with my distributor, and, after a little help from my parents (AKA the greatest backup ever)  I’m pleased to report that I will have the correct generation transmitter within 48 hours.

One of the most valuable things diabetes teaches you is how to advocate for yourself- and not give up. The best part about this skill is that it’s applicable to the rest of your life as well. Closed class you want to enroll in? You’ll make it happen. Feel like you’re doing more than your fair share of a group project? You know how to address it. If I’m addressing a diabetes issue (like when a prescription is delayed in being mailed due to an error on the pharmacy’s part), I know that I am in the right- and I carry that confidence over to advocating for myself in non-diabetes situations.

So, the bottom line is- follow up, make phone calls, do whatever is necessary to make sure YOU get what YOU need, don’t assume that everything will be pushed through correctly (unfortunate but true), and DON’T. GIVE. UP! 🙂

 

Diabetes Is, Part 2 (optimism)

Diabetes is being part of a community of diverse, creative and supportive people who all share one thing; non-functioning beta cells.

Diabetes is having friends all over the country, and getting to know people you never would have met without this diagnosis.

Diabetes is being able to give your workout 150% when your blood sugar is high, and you don’t have to worry as much about going low.

Diabetes is having spontaneous dance parties in your living room when your blood sugar is just a little high, and you want to get it down by getting down.

Diabetes is being a master at reading nutrition labels, and doing simple math in your head. It’s already knowing decimals and ratios when you start third grade math, and being ahead of the rest of the class. They know that stuff so that they can pass a test; you know that stuff so you can eat lunch.

Diabetes is developing amazing analytic and pattern-recognition skills. Picking out variables that affect a particular outcome (blood sugar) is second nature.

Diabetes is being fearless in the face of needles.

Diabetes is convincing people that your pump is a battery pack, and that you’re actually a robot.

Diabetes is having a ready-made excuse when you want to get out of doing something. “Sorry, I can’t help you bring in the groceries, my blood sugar’s low.”

Diabetes is doing whatever the heck you want to do, while also doing the job of one of your internal organs. (Not easy, but we’re pros.)

Diabetes is instantly making friends with strangers when you notice a pump or glucometer.

Diabetes is having the BEST stories. (“So this one time, when I was low, I almost ate a sponge…”)

Diabetes is spending so much time on hold with insurance companies, supply distributers and pharmacies that you’re convinced you could play their “hold” music from memory…despite not actually knowing how to play the piano.

Diabetes is probably having enough lancets stocked up in your supply cabinet (THAT cabinet) to last you a solid 5 years.

Diabetes is your roommate wondering why you keep your laundry detergent on top of the fridge, and explaining that it’s actually full of used needles, not soap…

Diabetes is when your friends and roommates keep your food preferences in mind when planning outings, or what to make for dinner. It’s when they start picking up and using your dialect of diabetes-lingo. It’s when they always remember to buy diet soda for you for parties.

Diabetes is an open door to a world of opportunities. It’s having a perfect college application essay topic. It’s having a standout reason for going into your field of choice. It’s being motivated to help others like you because you understand what they’re going through on a personal level.

Diabetes is knowing that if you can manage a chronic disease for most of your life, you can do ANYTHING.

Diabetes Is

I’ve been feeling a bit pessimistic (okay, REALLY pessimistic) about my diabetes lately, dealing with several days of consistent highs, and now consistent lows, so here’s my semi-poetic rant that’s also appropriate because it’s diabetes awareness month.

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Diabetes is NEVER sleeping through the night. My CGM is like a newborn child; it loudly wakes me up every two hours to scream for insulin or sugar, then forces me to stay up, making sure everything returns to normal.

Diabetes is having to stop your workout after 10 minutes because your blood sugar is falling fast- despite eating 50 carbs before you started.

Diabetes is learning how to deal with insurance companies at a much younger age than everyone else.

Diabetes is going into absolute panic mode if someone suggests eating out at someplace where you don’t know the menu. It’s ordering a salad because enjoying the dish you really want isn’t worth twelve hours of inconsistent blood sugars.

Diabetes is suddenly realizing that you prick your fingers and inject insulin many times EVERY DAY- with no immediate reward. Sure, good blood sugars are nice, but that’s nothing special. Non-diabetics have great blood sugars every day.

Diabetes is worrying that every time you tell someone “I have diabetes,” they’ll assume that you’re irresponsible or unhealthy, or (if it’s someone in an authority position) they won’t let you do what you need to do to take care of yourself.

Diabetes is never being able to go anywhere empty-handed, having to carry juice boxes as a childless adult, having to make sure you take everything you could possibly need- or else you could be stuck without insulin.

Diabetes is being forced to eat when you’e not hungry. It’s only drinking juice when you have NOTHING else to treat your low, because you’ve grown to hate it. It’s buying a bag of discount Halloween candy, and wanting to throw it all away two days later because the thought of eating any more sugar after a spate of lows makes you feel sick.

Diabetes is not being able to eat when you ARE hungry because your blood sugar is high and won’t come down.

Diabetes is knowing that no matter how hard things get, there are people around you who support everything you do. It’s knowing that what goes up must come down, and what goes down must come up. It’s knowing that every day is different, that your blood sugars will be better tomorrow. It’s knowing that the technology that keeps you alive will only continue to get better, and that one day, there will be a cure.

(But probably not in 5 years, like everyone always says.)

Stay tuned for a more optimistic “Diabetes Is, Part 2”!